Has Living With a Rare Skin Condition Helped Me Shed Old Habits?

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by Lena Riedl |

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Growing up with a rare skin condition, such as epidermolysis bullosa (EB), gives a person a lot to worry about and tends to make them want to have control over their environment. Because my skin is missing a certain collagen, the layers of the skin do not stick to each other as they should. My skin blisters and can even tear. So I never know how the next day will go.

My life has taken a different turn these last few months, one I didn’t see coming at the beginning of summer. A big advantage of these changes is that they finally made me leave my comfort zone.

When I was younger, plans could change constantly because of EB. I might suddenly find myself spending a holiday week in bed while my family went skiing.

I grew up worrying a lot about my future. Will I be able to live a “normal” life with my condition? Will it get better or worse? Will I be able to go to school dances? Will I have a boyfriend? Can I travel with friends? Can I go to college?

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The Benefits of Writing a Monthly Column About EB

This is probably how I learned to want to have control over everything — because I lived with so much uncertainty. I couldn’t know back then that I would always find a way to do the things I wanted to. Life has always good to me.

Don’t worry, be happy

At the start of summer, so many different things happened that it felt like I was starting at the beginning, as if I had a blank sheet of paper and I could choose to rewrite my story.

Because life has thrown me a little off balance, I have had to learn to let things go and to trust. In August, I asked myself if living with a rare skin condition has somehow prepared me for something like this because all at once I quit a job, moved out, and had to say goodbye to people. Doing it was sometimes hard, sometimes easy, but mostly for the best. Once I was able to let go of how I thought things were going to go and just accepted that things were now going to go differently, everything just started falling into place.

Being off balance has pushed me, given me a strange kind of strength and the ability to finally listen to what I wanted to do and to take the big steps toward fulfilling my dreams. I am now in the middle of starting something big, something that I still can’t believe I’m brave enough to do. But I am. I have left my comfort zone. And for that I’m grateful.


Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.


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